Beth Hawkins, NP: VAD program coordinator

As recently as 15 years ago, ventricular assist devices, or VADs, were a rarity in pediatric hospitals. And they surely weren’t portable for use outside of the hospital setting. With new technologies that make living life at home and at school possible for children with VADs, an entire new field of care management is emerging.

Beth Hawkins, NP, began her career with the Heart Center as a CICU nurse in 2008. She later joined the Heart Failure clinic, where she worked closely with Christina Vanderpluym, MD, Medical Director of the Mechanical Circulatory Support Program. Together with nursing administration, Vanderpluym and Hawkins recognized that the growing number of children who were receiving implanted VADs needed a dedicated care coordinator. Hawkins became the Heart Center’s first VAD Coordinator in 2014, and her work in this role has improved the quality of life for patients by leaps and bounds.

Hawkins is there for her patients from the very beginning of their VAD journey. She actually sets up the pumps in the OR for the implantation operation and follows each patient throughout the ICU course. During this recovery period, Hawkins trains family members on the care and maintenance of VADs and the kinds of medical complications that may arise. “Some people will bring their entire extended family to the hospital for the training,” she says. “I make sure everyone has a chance to perform hands-on demonstrations with the device.” There’s even a written test at the end!

Beyond the hospital setting

A lot of things have to be taken care of before a patient is discharged with a VAD. Besides educating a patient’s family, Hawkins also travels to his or her local community and holds educational sessions for the local emergency room staff as well as first responders, including EMS, firefighters and police. She also educates staff, nurses and administrators at the patient’s school, in person and via webinar. When young children are returning to school with a VAD, it is important that their classmates understand why they need to wear a controller with batteries attached to it all the time. Even though their hearts were in trouble, they can play and participate in just about every typical childhood activity.  The only thing they can’t do is swim.

Coordinating, ordering and delivering medical supplies to patients is also an important task.  Hawkins worked with clinical nurse specialists and a local medical supplier to create a pediatric driveline dressing kit that includes everything a patient needs, so that families do not have to spend their own time and money searching for all of the right supplies. (Dressing supplies can cost thousands of dollars every month, and insurance will not always cover this cost.) The dressing kits are routinely delivered to patients’ homes. Patients also need home INR monitors to measure anticoagulation levels at least once a week. Patients or parents send daily updates to Hawkins and her team, typically via text or email, notifying her of how the pump is functioning and whether any alarms have occurred.

Hawkins also emphasizes that it’s important to be aware of the weather, because freezing temperatures can damage equipment. “Prior to any severely low temperatures, I will call and remind patients to not leave equipment in their cars or outside for too long,” says Hawkins. “With hurricanes or blizzards, I’ll ask families if they want to come ride out the storm with us. I offer them local housing near the hospital, but if they want to wait out the storm, I’ll remind them where the closest ER is in case they lose electricity and need to plug in. I also always make sure the local ERs are aware of our patients in the communities just in case this happens.”

New horizons

“We just got a FIT grant to make our own monitoring app,” Hawkins announces. “There’s a lot of potential there. It will have features that allow patients to easily enter their daily weights and pump parameters, but it will also contain information for first responders in the event of an emergency. This information will provide instructions for appropriately treating a patient who is unresponsive on VAD support.” Hawkins and Vanderpluym are also working with OpenPediatrics to create instructional videos that can be used for training community members, primary care providers, school nurses, patients’ friends and classmates, and parents/families. “Different age groups can understand things on different levels,” Hawkins notes. “We tailor each training to our particular audience, and with OpenPediatrics, we can create a spectrum of videos.”

Hawkins has traveled all around New England educating communities about VADs, and she participates in national forums for VAD Coordinators. That’s how she found out that no one had ever sent a patient with a VAD to live on a college campus—until she made it possible for Deyven Ferreras, who is now finishing up his freshman year at Bentley University. Hawkins was determined to help Deyven achieve his dream and live as normal a life as possible, so she spent countless hours educating college administrators, health personnel, resident advisors, professors and local emergency responders.

Saying Hawkins is committed to going the extra mile for her patients would be an egregious understatement. Patients reach out to her via text if they have any concerns or worries, and families stay in touch long after their VAD experience has ended. She also offers to connect patients and families so they can learn from, encourage and support one another.

As of December 2014, 47 patients have been supported by mechanical support since the Heart Center’s VAD program started in 2005. “There are constantly new developments with VADs,” says Hawkins, “and my job is to make sure our patients live as normal and full a life as possible. It’s incredibly fulfilling, and I am inspired by the patients and families I work with every day.”